Healthcare has historically underrepresented and underserved minoritized communities. Today, drug developers are working to change that.
Minoritized and marginalized communities face disadvantages in healthcare due to geography, lack of representation, and social issues that lead to fewer resources for these groups. This disparity has caused certain communities to receive lower quality care and be excluded from clinical trials. Learn more about how we’re trying to bridge that gap.
Representing everyone in clinical trials and healthcare settings is vital to providing the best care to people across the globe. Including more populations in clinical trials advances studies so that the results are generalizable and benefit as many people as possible.
PRA Health Sciences knows that the path to equal healthcare means innovating and partnering with communities that are not currently well-served in the industry. In honoring this year’s National Minority Health Month, PRA continues to be committed to using our HI*PRA values to create better resources and promote diversity in our trials.
Healthcare Challenges in Minoritized Communities
Minoritized communities face disadvantages in healthcare due to geography, lack of representation, and social issues that lead to fewer resources for these groups. This disparity has caused certain communities to receive lower quality care and be excluded from clinical trials.
The American population is approximately 13% Black, 18% Latinx, and 5% Asian. However, when it comes to clinical trials, 5% Black, less than 2% Asian, and less than 1% Latinx are represented. That means we’re not serving these populations to the best of our ability, and that there are obstacles preventing these communities from being included in clinical trials and the healthcare setting.
Stereotyping and Prejudice
Societal prejudices and stereotyping exist in healthcare and in society as a whole. Discrimination often takes the form of inadequate care from caregivers, or through inequitable access to healthcare services and resources. Recent studies have found that significant numbers of patients feel vulnerable to prejudice in the healthcare setting due to racial or ethnic identity. These patients also experience more negative healthcare outcomes and are less likely to seek treatment or care.
Accessible Healthcare and Clinical Trials
Many underserved communities don’t know that a clinical trial even exists for their condition. If they don’t know about it, they can’t participate. Without participation, they are excluded from the results, meaning that many drugs don’t benefit them the same way as they do the included groups.
The cost of care prevents many people in low-income areas from accessing medical resources necessary to treat them. Many studies have shown that Black Americans often receive lower quality care or incorrect diagnoses compared to white Americans with identical presenting symptoms. These studies have shown that these types of disparities can result from prejudice and inadequate representation in healthcare.
How Drug Developers are Changing Healthcare and Clinical Trial Access
Drug developers are working to create a more equal landscape for healthcare and clinical trial access for minoritized communities. However, doing that requires more than a quick fix—it requires the industry to take the right steps to form patient-centric solutions. The pandemic has demonstrated the remarkable power of technology and innovation, so these new approaches are also revolutionizing how we conduct clinical trials. New approaches also ensure that clinical trial participants are more representative of the population as a whole. For example, employing decentralized clinical trials that leverage a mobile health platform reduces the barriers of participation and also allows a more diverse, distributed group of patients to participate.
Some solutions involve technological innovation, but many others require us to change the approach to healthcare.
Digital and Remote Solutions
Until recently, most clinical trials have required in-person visits, which means more traveling and higher costs for patients. Decentralized clinical trials (DCTs) are changing that.
DCTs allow us to expand our reach into communities that would otherwise not have access to a trial site due to location or financial inability. They bring clinical development to patients where they already are—in their own homes, on their own devices, on their own time. Leveraging intuitive digital tools, DCTs also make study startup, patient recruitment and retention, and protocol compliance easier for patients and sponsors alike. With fewer or no in-person visits, patients can eliminate or lower their travel costs, enabling more people to participate in fully remote trials.
Currently, many populations go underrepresented in clinical trials due to factors that include:
- Inconvenience to patients and caregivers
- Routine interruptions
- Language barriers
- Lack of access to information
PRA uses patient-centric technology like our Mobile Health Platform, which allows us and our partners to conduct some trials fully remotely and significantly reduce in-person visits in others.
We train our professionals to communicate effectively with remote patients because we know it’s not just about making better technology. We also use apps and artificial intelligence (AI) to transfer necessary data to researchers, creating minimal effort participation for patients.
Outreach and Education
Technology helps us, but we also must make sure everyone understands how to use it and how to interact with people remotely. That means educating people on the needs of minoritized communities, both in terms of healthcare and personal biases. PRA trains employees on effective communication that focuses on the patient and builds a positive relationship.
According to Scott Schliebner, Senior Vice President of the Center for Rare Diseases, “To build trust within underserved communities, come in asking how you can help. Ask how you can learn. Even flat out ask, ‘What can I do to learn from you?’ That’s a great way to start—these communities know more about themselves than we can even begin to grasp.”
Outreach involves creating patient awareness of clinical trials. When patients know about a clinical trial, they sign up. Reaching out specifically to these communities means we can promote inclusion by being more active with monitoring and educating providers, while creating more opportunities for minority patients to access care and trials.
Broadening Eligibility Criteria
In 2020, the FDA released new guidelines for broadening eligibility criteria to include minoritized communities and others who have been excluded from trials up to now. These guidelines suggest that labs remove unnecessary criteria that doesn’t exist for the benefit of patients. It asks experts to reconsider their criteria based on advancing trial phases and whether the regulations need to be as restrictive as the study progresses.
We must consider intersectional groups and how different factors relate to a study. That includes the way gender, race, ethnicity, disability, and genetics can change a person’s response to a new drug and identify population-specific characteristics.
Why We Need Equality and Representation in the Healthcare Industry
Representation in the healthcare and pharmaceutical industry goes beyond morality. We need inclusion in our studies so that we can create the most effective treatments for everyone and ensure that our data represents the actual population so that everyone reaps the benefits.
More Accurate Data
When we only collect data from a specific group, we ignore a significant part of the population of people who experience a disease. That means we get incomplete data, both in terms of who suffers from the disease and how a trial drug affects them.
As a result, we get a drug that doesn’t work for a large number of people, which means we’re not serving everyone. When we foster inclusion, we get the full picture and can interpret more widespread data that gives us more information and more accuracy for improving treatments.
Serving Minoritized Communities
From both a moral and scientific standpoint, minoritized communities should receive the same high-quality care as more privileged groups. Serving minoritized groups means giving them the tools, access, and care they need to live healthier lives.
We must start at the source of the issue by understanding caregivers, researchers, experts, and others in the industry. At the same time, focusing on patient-centric technology makes trials more accessible and allows us to reach minoritized communities.
Personalized Treatment Plans
Different people have different experiences with the same disease. Part of patient-centricity means focusing on personalized treatment plans.
Personalized treatment accounts for each patient’s unique experience and condition so that it can fully benefit them, rather than hoping an overarching treatment will provide some relief. When we have a diverse population in healthcare and clinical trials, it allows us to learn how to tailor plans effectively to patient needs. It also shows us more about how environmental and genetic factors affect different people so we can include that information in our studies and results.
The current drug development research paradigm is flawed—fails to include a diverse and representative patient population. An effective approach begins with a patient-centric mindset, coupled with the use of mobile technology and connected health platforms. This approach enables research to become less reliant on site-based visits and bring equal access to new investigational therapies for all patients, regardless of geography, ethnicity, sex, or gender.
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